Body work: postural care for people with profound learning disabilities.

Able-bodied people can easily change their posture if they find themselves sitting uncomfortably. But people with profound and multiple learning disabilities (PMLD) don’t have that option.  When they feel uncomfortable they are unable to move themselves, and are often incapable of communicating their concerns. As a result they are highly vulnerable to the adverse effects of poor positioning.

 

To address this issue physiotherapists in Lincolnshire are providing a postural care service in the community, which assesses adults with PMLD and reviews them on an ongoing basis. Lincolnshire NHS Trust’s service started in November 2012. It was set up to maintain and improve the body symmetry of people with learning disabilities who are unable to change their own body position.

 

Specialist physios Lisa Defusto and Debbie Davison helped to establish the service and have been instrumental in its success. ‘We have set up two clinics in the county to assess the posture of adults with profound and multiple learning disabilities,’ says Mrs Defusto. ‘We reassess them every six months, or earlier if required, and then we monitor them annually.’

 

The physios are based at the Chapel centre in Spalding, a day centre for people with learning disabilities and the venue for one of the service’s postural care clinics. In addition to Spalding, monthly clinics are also held in Lincoln, and the service also has bases in Boston and Grantham. The physios work in a multidisciplinary team that includes occupational therapists, speech and language therapists and psychologists. They liaise with other health services, care providers, families and social services to provide support for their complex patients or ‘clients’.

 

As well as having a profound learning disability, people with PMLD also have physical disabilities and complex healthcare needs. The majority are life-long wheelchair users and their communication is usually non-verbal. In addition they may have respiratory issues, dysphagia (swallowing difficulties) and be fed non-orally. Due to these factors they need high levels of support and 24-hour care.

 

Without postural care and appropriate interventions they can develop a range of health problems, says Mrs Defusto. These can include pain, contractures, spinal deformities (such as scoliosis), an increased risk of fractures (due to reduced bone density), lack of muscle tone, loss of function and an increased likelihood of surgery. 

 

Mrs Davison explains that the postural care service aims to maintain, protect and restore body shape. ‘One of our main goals is to maximise their comfort,’ she says. ‘But postural management can also promote health and wellbeing. It can prevent and delay deformity, improve quality of life, maintain or improve independence and maximise potential.’ As a result the service focuses on activities and interventions that can maintain or improve an individual’s posture and function.

The physios have provided postural care advice and support since 2004, when they received training from Symmetrikit Postural Care. But in 2012 they furthered their knowledge by attending the Oxford Centre for Enablement’s postural management of people with complex disabilities course. With the combined knowledge from both courses the physios were keen to establish clinics that would allow them to conduct a higher standard of assessments.

 

Fortunately, funding to set up the postural care clinics in Lincolnshire became available in 2012 when NHS England commissioned a local quality improvement project through the Commissioning for Quality and Innovation Payment Framework. ‘It was quite challenging setting up a clinic service in such a rural setting,’ says Mrs Davison.

 

Lincolnshire has one of the largest healthcare communities, covering an area of 2,350 square miles, and clients attending a clinic often have to travel long distances and need specialist transportation. Clinics are held twice a month but the physios also conduct postural care reviews in people’s homes, which can lead to long journeys. ‘There are often cancellations for clinics because we are working with a high-risk patient group,’ says Mrs Defusto. ‘And we are very reliant on care staff. So, for instance, if a care staff member is off sick they may not be able to bring a person in for their assessment.’ 

When clients attend a clinic the physios conduct a full objective assessment. Trunk symmetry and pelvic positioning are recorded and the physios use their hands to feel for changes in the person’s structure. They also use tools such as a goniometer, rulers, measuring tapes and a spirit level.

 

Abduction and adduction of the hip and its relation to pelvic rotation is also measured. This is followed by internal and external rotation of the hip relative to pelvic obliquity, shoulder rotations, joint range of movements and depth and width measurements of the chest. A report is then produced, giving a baseline measurement of the client’s body symmetry and recommendations for ongoing care.

 

Depending on the findings a home visit may be arranged to assess the person’s positioning and ensure they have comfortable seating and night-time support. Or the person might be referred to their GP for a medication review or to other services, such as orthotics or wheelchair services. After each six-month review the physios record whether a client’s condition has improved, deteriorated or been maintained and submit the data to the trust.

 

Since November 2012 the physios have conducted 20 review assessments. The posture of eight clients has been maintained, eight have experienced improved outcomes and only four have deteriorated. ‘Deterioration is often linked to a person’s sitting position – so they are often referred to wheelchair services for a new chair or new wheelchair mould,’ says Mrs Davison.

 

Both physios agree that the service has raised the profile of physiotherapy within the trust, and that the best thing about their roles is working with such a rewarding client group. In the future, they hope to expand the programme to include people with less severe body symmetry problems. ‘This will give a baseline measurement and hopefully help us to slow down the progress of deformity for this extremely vulnerable client group,’ says Mrs Defusto. fl

Learning disability charity Mencap says there is currently little data on the population of people with PMLD. However, the government recently commissioned research into estimated future numbers of people with PMLD. The research, conducted by the Centre for Disability Research, suggests there will be a sustained and accelerating growth in the numbers of adults with PMLD in England from 2009-26, with an average annual increase of 1.8 per cent.

 

The data also suggests that in an ‘average’ area in England with a population of 250,000 the number of adults with PMLD receiving health and social care services will rise from 78 in 2009 to 105 in 2026. Mencap.